Eating Disorders Genetics Initiative (EDGI)
QIMR Berghofer Medical Research Institute is appealing for Australians aged 18+ who have ever had an eating disorder (including anorexia, bulimia, binge eating) to volunteer for the EDGI Study.
The EDGI Study aims to identify genes that predispose people to these eating disorders. Cracking the genetic code will enable us to develop new, and more effective, personalised treatments that target the problem directly.
If you would like to help us understand eating disorders and identify genes affecting progression and treatment, please participate in the EDGI Study. You can find out more below.
Before you start
Please scroll through and read the Information Sheet and indicate your consent at the bottom of the page.
PARTICIPANT INFORMATION SHEET
What is the purpose of the Eating Disorders Genetics Initiative (EDGI)?
Eating disorders are highly prevalent in the community. There is still a lot of controversy about the onset, diagnosis and treatment of individuals dealing with eating disorders.
The Eating Disorders Genetics Initiative (EDGI) is part of the largest and most rigorous genetic investigation of eating disorders ever conducted. Researchers from all over the world will collect clinical information and biological samples from over 20,000 individuals with and without eating disorders.
Who are the researchers?
This is a collaborative study conducted by the following major research institutions:
- Professor Nick Martin, QIMR Berghofer Medical Research Institute, Queensland;
- Professor Cynthia Bulik, University of North Carolina at Chapel Hill, USA;
- Professor Tracey Wade, Flinders University, South Australia.
Who is invited to participate?
We are inviting all individuals who have ever had an eating disorder to participate in this study, to investigate those affected with eating disorders and how this shapes eating patterns, behaviours and lifestyle.
What does my participation involve?
Your participation involves completing a questionnaire. The questionnaire asks about your lifestyle, eating habits, patterns and behaviours. It will take approximately 15 minutes to complete.
Before you participate we need your consent. The consent form is located at the end of this information sheet. We ask for your permission to collect, store and use the data as part of this project.
Once you have given your consent, you can then proceed to complete the questionnaire.
As this is a genetic study, we will also ask you to provide a saliva sample (a biolgical sample). We will extract your DNA from your sample to investigate genetic risk factors for eating disorders. To collect your sample, we will send you a specialised collection container for your sample. The collection kit is easy to use and the sample can be collected in your own home at your convenience. You will be asked to return this sample via Australia Post to our laboratory, at no cost to you.
What are the benefits of participating in this study?
This study is unlikely to be of any immediate benefit to you. Extensive research is required to find answers to the questions we are studying; however, future medical or scientific discoveries may come from the research in which you participate.
We will email participants an annual update that will provide a report on the progress of the project as well as any publications that arise.
Are there any risks?
There are certain risks or discomforts that might be associated with this research.
Some of the questions are about very personal issues. We will be asking questions about sensitive topics that may have been difficult or somewhat embarrassing. Some of these topics may still be painful for you to talk about. You will be asked to respond to these questions in a structured way by giving "Yes" or "No" answers for the majority of the questions.
What will happen to information about me?
All information and data collected for the study remains confidential in accordance with the National Health and Medical Research Council (NHMRC) ethical guidelines and the Privacy Act. Your data file will have a number assigned to it, not your name. Your name will continue to be on file at QIMR Berghofer but your name will not be linked with your data. Your answers will be completely confidential and are used only for the purposes of this research and will be stored securely, with access restricted to members of the research team.
The Privacy Act and the QIMR Berghofer Human Research Ethics Committee prohibit us from sharing any of your information with anyone else, and, in particular we are prohibited from discussing your information with anyone else in your family.
The researchers will store your information indefinitely at QIMR Berghofer Medical Research Institute. This information may continue to be valuable to researchers many years into the future, and may be considered for use in future, related projects. Before any future work proceeds it will be subject to approval by the relevant ethics committees.
Results of this study might be reported in a scientific paper in medical literature but your identity will not be revealed. In addition to your responses being used for this current project, your data will be stored for an indefinite period of time and may be considered for use in future projects. Before any future work proceeds it will be subject to review by the relevant ethics committees.
In accordance with relevant Australian privacy and other relevant laws, you have the right to request access to the information about you that is collected and stored by the research team. You also have the right to request that any information with which you disagree be corrected. Please inform the research team member named at the end of this document if you would like to access your information.
What will happen to my biological sample?
We will use your biological sample to extract one or more samples of DNA. The research team will then look for differences and similarities between participants' DNA samples. This information can help us understand why some people have a certain condition such as an eating disorder and some people do not, or why some people respond to a treatment while others do not.
Your biological sample and samples of your DNA will be stored securely at QIMR Berghofer Medical Research Institute along with samples from many other people. They will be re-identifiable, which means that they will be stored with a barcode label, and can be identified as yours even though your personal details are stored separately. Linking your personal details with your biological sample or DNA using the barcode is restricted to members of the QIMR Berghofer research team.
We may wish to send part of your biological sample and/or a sample of your DNA to another laboratory (which may be overseas) for processing or analysis. If this occurs, your part sample will only be labelled with a number, and transported along with samples from many other people. No information about you will be sent to or accessible by the other laboratory. Any sample remaining after processing or analysis by another laboratory will be destroyed.
We would like to store your biological and/or DNA samples for use in any future research studies that may or may not be related to the original research project. There is no direct benefit to you from the storage of your biological and/or DNA samples. In the future, other doctors and scientists at this and other medical and research centres may use your samples to learn about many different diseases and conditions. Their goal is to improve health outcomes and develop new treatments. The purpose of storing these types of samples is to answer questions in the future, so we expect to keep your samples for a long time.
What if I don't want to participate or what if I change my mind later and want to withdraw from the study?
A decision to participate in research should be entirely your own and you may refuse to participate, for whatever reason, in some part, or in all of the research, if you wish. You are free to withdraw at any time without giving a reason. To withdraw from the study you should submit your request in writing to the project investigator at firstname.lastname@example.org.
What if I have questions?
If you have any questions or concerns about this research project, you may telephone the Project Co-Coordinator Richard Parker on 07-3362-0297. You may also use our free call number: 1800-257-179, or email us at email@example.com. If you have any concerns or complaints regarding the conduct of this study, you may contact the Chairperson of the QIMR Berghofer Human Research Ethics Committee (QIMRB-HREC) via the Secretary on Tel: 07-3362 0117.
Clicking on the "Consent to proceed" button below indicates that:
- I have read the Participant Information Sheet or someone has read it to me in a language that I understand.
- I understand the purposes, procedures and risks of the research described in the project.
- I have had an opportunity to ask questions and I am satisfied with the answers I have received.
- I freely agree to participate in this research project as described and understand that I am free to withdraw at any time during the project without affecting my future health care.
- I understand that I will be able to save an electronic copy of this document to keep.
- I understand that my saliva sample will be used to help discover genes that may influence the risk for, and treatment of, eating disorders, using the latest technologies available for genotyping, sequencing and gene-expression analysis.
- I understand that this research may have some commercial potential in the future, and that my questionnaire and genetic information will be stored and may be considered for use in future research that may or may not be related to this research project. I understand that use of this kind can only be undertaken subject to separate review by the QIMR Berghofer Human Research Ethics Committee. I understand that if I provide questionnaire data and a saliva sample they will be used freely for these purposes.
- I understand all information gathered during this research project will be treated in a strictly confidential manner in accordance with the National Health and Medical Research Council (NHMRC) Guidelines and the Commonwealth Privacy Act.
You have chosen not to participate in the online questionnaire of this study. We thank you for your interest.
If you decide at a later date to participate please direct your browser to the study website.
If this was in error and you want to participate, please refresh your browser and you will return to the Participant Information Sheet.